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2018 Top-Rated Nonprofit

USACFA, publishers of CF Roundtable

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Nonprofit Overview

Causes: Digestive Diseases & Disorders, Health, Lung Diseases

Mission: As an organization operated entirely by adults with CF who volunteer their time, our mission is to provide a source of information and education for adults with CF regarding the basis, nature and progression of CF, the latest treatments and research, and to assist in the psychosocial aspects of coping on a day-to-day basis. This is accomplished by publishing a free, quarterly newsletter called CF Roundtable, and through our website and social media sites.

Results: The US Adult Cystic Fibrosis Association now has over 3000 subscribers to the CF Roundtable newsletter, website and our social media platforms such as Twitter, CF Roundtable FB, CF Connect FB and LinkedIn. CF Roundtable newsletter is available in print (snail mail), by email (PDF) or online through our website when a person subscribes. Anyone can subscribe to learn more about CF and its effects on adults with CF and their families.

Target demographics: Adults with Cystic Fibrosis

Direct beneficiaries per year: Over 3000 subscribers and 13 college students with scholarships.

Geographic areas served: the United States with individuals and organizations within the CF Community

Programs: 1. CF Roundtable, our national quarterly newsletter available for free in print or online via our website, www.cfroundtable.com. 2. Website blog, resources, links to Facebook, Twitter and LinkedIn.

Community Stories

118 Stories from Volunteers, Donors & Supporters

Volunteer

Rating: 5

CF Roundtable is an excellent publication that serves to better the Cystic Fibrsosis community through inter-patient collaboration, patient testimonials, and keeping the CF community up-to-date on the latest research breakthroughs. It is a strong support system for the CF community. I have experienced this first-hand, as I am a CF patient myself. Thank you to USACFA for providing such a wonderful and vital support system to the CF community! Five stars!

1

Volunteer

Rating: 5

I love being a volunteer for CF Roundtable and connecting more deeply with the CF community by reading about CF experiences through the CF Roundtable newsletter, website and social media. I learn so much and realize how many experiences are similar to mine; I get to collaborate with many others with CF in the community. This is an outstanding organization providing a unique product that helps adults with CF cope with this disease.

1

General Member of the Public

Rating: 5

CF Roundtable has been a lifeline of information and support for my family and the CF community.
Hoping you continue your good works long after a cure is found!

3

Board Member

Rating: 5

I have been involved with CF Roundtable for 23 years. I love being involved with this organization. The newsletter provides me and so many others with valuable information and a variety of perspectives on living with CF. The volunteers involved with the group are all committed to helping others with CF and providing a support network through the newsletter and other activities. My life has been enriched by my involvement over the years.

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Board Member

Rating: 5

CF Roundtable has been a life saving resource for me and many others. The newsletter started as a resource for adults with CF when there were no other adult focused organizations. I also think parents of children who have CF can also gain a lot by reading the articles in the CF Roundtable.

Now with the addition of a blog CF Roundtable provides up to date information on medical research and up to the minute information on efforts to protect the rights of people with CF.

The CF Roundtable community of readers are interested in learning more about CF and always ready to help others. The articles provide important information that helps people live healthier lives. Reading about others with CF makes me feel stronger and gives me hope for the future. Writers provide information that has resulted in me learning about new ways to deal with CF and the effects it has on my life. I am grateful for the CF Roundtable.

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Volunteer

Rating: 5

Well, now it has been 29 years that I have volunteered with USACFA and CF Roundtable. I feel that every one of my volunteer moments has been well spent. Since there are no paid employees, all the work is done by volunteers who have CF.
I learn something new about my disease every day because of the articles that our readers submit. When we started this organization in 1990, we knew it could take 20 years to get established and to accomplish our goals...and it has. We now are able to give scholarships to deserving young people who have CF for their vocational or college educations. The newsletter has grown from a dozen pages at the beginning, to 60 pages that are chock full of good info.
I will continue to volunteer here as long as I am able.

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Volunteer

Rating: 5

It has been my pleasure to volunteer with USACFA and CF Roundtable for 28 years. This group puts every cent that it receives into production of the only newsletter that is just for adults who have CF in the U.S.A. and into sharing information and resources with those adults. There are no paid employees of the organization. One hundred percent of your donation goes to the stated goals of the organization. I have CF and I find the newsletter invaluable.

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General Member of the Public

Rating: 5

CF Roundtable is a non-profit run completely by volunteers with cystic fibrosis. The newsletter brings together those with CF to discuss, support and learn - with the ultimate goal of enhancing the lives of those with CF.

I have been reading CF Roundtable since 1998. I am so grateful for the connection to the CF community and information regarding the illness.

1

Volunteer

Rating: 5

I love volunteering for this nonprofit, I always feel like I'm contributing something important.

1 lmentch

Board Member

Rating: 5

CF Roundtable was one of the first places I was able to find support for and information about living with CF following my late diagnosis. Each issue and every page of the newsletter was read as soon as it arrived in my home. The wisdom and experiences of others was valuable support in my learning about living with CF.

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Board Member

Rating: 5

CF Roundtable was the first source of information about living with CF as an adult that I found after being diagnosed 13 years ago. I had so much to learn. Having the resources of CF Roundtable together with my CF care team has made my introduction to CF a little easier and definitely richer.

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1

Client Served

Rating: 5

CF Roundtable is just wonderful!
The stories and articles really hit home and are so relevant to our life as my spouse has CF.
I am often quite touched by the experiences that are expressed in this top notch publication.
Thank you CF Roundtable

2

Board Member

Rating: 5

USACFA is the greatest disseminator of information for adults with Cf. The stories are real and recognize aspects of CF that are often ignored. I am so thankful for USACFA’s commitment to being such a wonderful resource for the CF community!

2 paigerussell48

General Member of the Public

Rating: 5

I look forward to reading the CF Roundtable every three months, and not just because my cousin, Kathy Russell, is the Managing Editor! The articles are informative, poignant, funny...sometimes all at once. It does give me more insight into Kathy's world. I sometimes share CF Roundtable with parents of CF children who are unfamiliar with the publication. CF Round Table provides a sense of community and hope. I am grateful for all of the hard work that goes in to it, and for the organization it represents.

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Donor

Rating: 5

I heartily second everything Laurie W, my sister, has just written in her review! The CF Roundtable is compelling reading and a gift that keeps us informed and connected to the wonderful CF community.
A very hard-working group of volunteers produces this excellent newsletter.

2 Ella B.

Board Member

Rating: 5

I was invited to be a director for USACFA from the now Vice President, during a difficult time in my life when I came to the realization I could no longer pursue a full-time career due to my health. USACFA has allowed me to find my passion for connecting and helping others in the CF community. I have met so many amazing fellow CF fighters through this organization. I can't say enough good things.

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Board Member

Rating: 5

USACFA (CF Roundtable) is an amazing organization that I have become a part of in the past year. Fellow directors are some of the most dedicated, inspirational, driven, and intelligent people with CF I know. This publication has allowed me to share personal experiences and struggles of living with CF as well as learning an incredible amount from reading other's stories as well finding out about new research on the horizon for CF patients. USACFA and CF Roundtable has helped me connect to the CF community in a way I never thought I could and I am so thankful and delighted to be a part of this organization!

1

General Member of the Public

Rating: 5

CF Roundtable is a non-profit run completely by volunteers with cystic fibrosis. The newsletter brings together those with CF to discuss, support and learn - with the ultimate goal of enhancing the lives of those with CF.

2

Board Member

Rating: 5

CF Roundtable Newsletter is filled with invaluable information. It has taught me so much over the years. The articles serve as an educational resource and as a source of support. The articles, all written by adults with CF, address the physical and emotional challenges of living with CF.

2

Board Member

Rating: 5

I cannot say enough good things about not only benefiting from the CF Roundtable, but also being involved as a volunteer. Before I became a Director, I enjoyed what USACFA offered the Cystic Fibrosis community. They are staple and have led the way for other organizations in terms of information and creating unity. As a Director, I have felt nothing but support, have been given all of the necessary tools to succeed, and have felt a great sense of pride being able to contribute in the best way that I can. The organization as a whole is so passionate about what they are doing that it is easy to find the motivation to be as involved as possible.

1

Volunteer

Rating: 5

I love reading CF Roundtable. When the newsletter arrives in the mail I stop what I am doing and read it cover to cover. Blog posts are also very informative. CF Roundtable is a treasure. I learn si much from each article.

1

Volunteer

Rating: 5

I have been reading CF Roundtable for many years and I'm proud to serve as a board member for the organization. The newsletter, blogs, and social media presence are such a great resource for all of us with cystic fibrosis. It's free and easy to sign up.

Board Member

Rating: 5

I started reading CF Roundtable several years ago. I'm now proud to serve as a board member for the organization. The newsletter, blogs, and social media presence are such a great resource for all of us with cystic fibrosis.

Board Member

Rating: 5

The great thing about the CF Roundtable is that it keeps evolving. The publication continues to provide very insightful and timely information by and for those with Cystic Fibrosis. Published quarterly, each issue has a focus topic theme in addition to regular columns like Ask the Attorney, Speeding Past 50 and Information from the Internet. Where the organization has grown has been in adapting to reach out further into the community. Originally mailed to subscribers only through the US Mail, the CF Roundtable is now available for download along with past issues and several blogs are published via email each week. It is a great way to stay connected. Finally, the organization which publishes the CF Roundtable now offers scholarships to students with CF proving their commitment to further strengthening the CF community.

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Board Member

Rating: 5

The CF Roundtable is a fantastic publication. As an adult with CF, I look forward to receiving my free quarterly issue by US mail and by email. It's rare to find a newsletter that connects on so many levels but the CF Roundtable consistently does just that. It addresses issues that I have dealt with or most likely need to plan on dealing with in the future. Every page provides insights and perspectives from a CF adult, family member or caregiver. It's inspirational, educational and sometimes funny. And the best part is that when I find it appropriate, I can share my story with the greater CF community, get published and feel like I'm really making a difference. The CF Roundtable has also been a valuable tool for my wife to learn about aspects of CF that she might not normally be exposed to. Thank you Roundtable for bringing the CF family together.

1 Jennifer641

Board Member

Rating: 5

I've been reading the CF Roundtable, published by USACFA, throughout my adulthood (I think I received my first newsletter in college, I've been in my professional career over fifteen years) -and always learned something from it. The content is a balance of practical work/life and up to date treatment information relevant to the cystic fibrosis community. The outreach over the years has only grown and expanded - through social media and other outlets to continue to offer content accessible, and free, to both subscribers and the public in whatever format they opt. With so much going on in the adult CF community, it is great to have the CF Roundtable put everything together in one place.

1

Board Member

Rating: 5

USACFA has made a difference in so many lives of those living with CF over the years. I began reading the newsletter about 15 years ago and I always learn something new. Besides informing their readers of clinical advancements and clinical trials, they also address the emotional impact of CF. So often this aspect of CF gets overlooked. Reading articles written by adults with CF who have walked the same path as you provides support that is so difficult to come by in a rare disease community, especially given the isolating effects of strict infection control policies. I'm so proud to be a part of this organization!

1

Volunteer

Rating: 5

As a volunteer for the US Adult CF Assn and an avid reader of their newsletter, Cf Roundtable, I feel they offer the CF community support, inspiration and an environment to share experiences. Living with cystic fibrosis can be isolating and lonely but being part of this organization helps me feel part of a big family who cares. I am happy to see them grow and gather more readers who then become writers.

1

Board Member

Rating: 5

USACFA (publisher of CF Roundtable) has always been a beacon of advocacy in the CF community. Their publication covers many avenues of living with CF, and always offers a well-organized, thought-provoking, and optimistic tone for the reader. So thankful for all that they do, and I'm honored to work with such a passionate group of people.

1

Board Member

Rating: 5

As an adult with cystic fibrosis, CF can be an isolating disease. CF patients are not allowed physical contact with each other and the CF Roundtable provides a critical outlet for patients where we can connect and share experiences and knowledge. The publication is diverse and addresses a wide variety of issues within the CF community, including social and financial challenges, seeking higher education, working, traveling and clinical innovations. There really is no comparable publication in the CF community!

1

Board Member

Rating: 5

I have been reading CF Roundtable for many years and am proud to now be a part of the organization. It is a great resource for those with CF to learn about studies and exciting news in the CF world. But it is also a great way to connect with other CF adults and their stories, via the quarterly newsletter and online on the CFR blog. I highly recommend this organization for anyone with CF.

1

Client Served

Rating: 5

CF Roundtable, produced by USACFA, is an invaluable resource for anyone dealing with CF, whether it be patient, caregiver, or medical professional. CF Roundtable provides first hand accounts of what it’s like to actually live with CF and is also a fine source of information and research. CF Roundtable is inspirational, to say the least, as are the volunteers who produce it.

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Client Served

Rating: 5

CF Roundtable is one of the most valuable resources currently available for adults with CF as well as caregivers of those with CF. It provides a unique perspective of living with the disease as well as practical information and research. Given the fact that it is produced by volunteers who all have CF makes it particularly remarkable. Kudos to those who do such a fine job of keeping the CF community so well-informed and so connected.

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Professional with expertise in this field

Rating: 5

As a 52 year old with, I have been reading, enjoying and benefiting from the roundtable for about a year. It is an important resource for people with CF, parents and family members, providing information about scientific developments in easy to understand language. Thanks to all the people working on this.

1 Dawn133

General Member of the Public

Rating: 5

As a 49 yo CFer, I have been reading, enjoying and benefiting from the Roundtable since its inception many moons ago. It is an important resource for people with CF, parents and family members, providing information about scientific developments in real-speak, a column highlighting studies and news related to CF, ideas and stories written by USACFA members and guest writers on how not only to live with CF, but thrive. It has done a great job keeping up with the exciting and dramatic developments in medication and treatments. Roundtable is a critical tool for a small community, bringing us together and keeping us informed, inspired and hopeful. A treasure kept alive by incredibly dedicated people for whom I am very thankful!

1

Client Served

Rating: 5

The CF Roundtable provides a very informative newsletter for those with cystic fibrosis. I have learned a lot from it. It also has very good blog posts about important news that comes up in between newsletters. It brings a sense of community to those with CF as well as understanding to the many complexities of this challenging disease.

1

General Member of the Public

Rating: 5

Awesome organization! Community sourced information that is important for all members of the community. Special focus on adults living with CF. Would highly recommend this organization to anyone looking to stay up on all aspects of cystic fibrosis, science, social and more.

2

General Member of the Public

Rating: 4

My wonderful wife has CF and USACFA (and the CF Roundtable) are an invaluable source of information that helps to keep me up-to-date on the latest CF news but also serves as a space of inspiration and reflection with every issue. Thank you to the USACFA team and all of the incredible CFers out there. You're the best!

1 Meranda S.

Board Member

Rating: 5

I have been a board director for USACFA since 2013. Prior to joining USACFA I was a long-time reader of CF Roundtable, which is published by USACFA. The board directors are dedicated to educating, empowering and sharing valuable information with the CF community. I am honored to be part of this organization!

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Volunteer

Rating: 5

USACFA is an excellent non-profit organization serving adults living with Cystic Fibrosis. CF Roundtable is a useful and relevant source for information pertaining to CF including patient experiences and clinical trials.

1

Volunteer

Rating: 5

This is a great source of support fr those who have cf and their families.

Board Member

Rating: 5

The US Adult CF Assn (USACFA) is an excellent organization that I have been proud to be part for 7 years. CF Roundtable and the accompanying website are tremendous support for me and, I believe, for the CF community. I'm able to meet others with CF through the CF Roundtable social media sites, share our stories, learn from each other and laugh too.
The newsletter is engaging and chockfull of information on all aspects of CF. I look forward to its arrival in my mailbox. I encourage any adult with CF to subscribe to it!

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Volunteer

Rating: 5

CF Roundtable is fabulous source of support for me, my husband and family. The articles are so informative and inspiring such as Beth's legal and Laura's research updates, Isa's spirituality, Julie's Wellness and Kathy's getting older columns. The focus topics often leave me chuckling, commiserating, awed or taking notes depending on the topic. I read it cover-to-cover as do members of my family. We feel great after reading from the validation that there is world out there that understands!

1

Board Member

Rating: 5

As the publishers of CF Roundtable newsletter, the US Adult Cystic Fibrosis Association provides an important source of connection, information, and support to an often isolated and small orphan disease population. USACFA is run by adults with CF, for adults with CF and their care-partners and families. I was honored to join the Board of this organization last year after several years of readership and contribution.